My mom died in January of 2016 after being diagnosed with stage 4 cancer seven months before. Looking back, there were earlier signs, but they were explained away as “getting older” for over a year. I’m not mad at the doctors. I am raging pissed at cancer.
At the time of her diagnosis, I lived in Northern California and Mom lived in New Mexico, where I was born and raised. I’d seen her a little more than a year before, and she was her usual happy self. Now, I can hardly believe I didn’t realise something was wrong. I blame living so far away.
When Mom phoned and told me about the cancer, she casually mentioned upcoming chemo treatments and that her cancer was already stage 4. She lived alone. I couldn’t sit here in sunny California while she drove herself to treatments. I couldn’t imagine leaving her to deal with something that heavy by herself. I told her I was on my way.
My husband and I had a small press business. He handled the financials and IT; I did the rest. But he agreed I should go care for Mom. We both agreed he couldn’t run the entire business by himself with his own full-time job. I cried as I decided to sell the business.
I loved working with authors and artists. This had been a dream job for me. I still have a deep sadness when I think about it. But when I was done crying, I turned my resolve into caring for Mom. With a deep breath, I boarded a plane to New Mexico and moved into her spare room.
I knew it wouldn’t be easy, but I was in denial about how hard it would be. I envisioned I would take her to her appointments, pick up her meds, cook dinner for us, and stay by her side. That’s what happens in the movies, right? There’s a struggle, the caregiver helps with the little things, and then the patient beats the cancer. Instead, it nearly destroyed me.
The reality of caregiving is one of those subjects society doesn’t talk about. It’s too closely associated with dying and people don’t want to discuss that, either. It’s messy physically and emotionally. It wrecks your relationships and your health. Everyone is expected to be strong and endure without complaining.
Even when the doctors called to tell us the chemo wasn’t working and they could no longer help her, Mom was in denial. We fought about her going shopping with friends when she wasn’t supposed to go out due to pneumonia risks. We argued when she wanted to drive her van after her reflexes slowed. At one point, she threw her phone at me.
I was exhausted by the drive-bys to see if restaurants were empty because she demanded we go out even though the doctors insisted she avoid crowds. At the restaurant, she’d order three entrees and four drinks. I told the waitresses to just bring it. It was wasteful and costly, but it was about giving Mom those small moments of happiness.
Hospice was associated with dying, so Mom wanted nothing to do with it. When it was time to call them, I went out in the back yard and bawled. I wish I had called sooner. They gave me as much care as they did Mom. While they were with her, I didn’t have to feel guilty about taking a bath or getting an hour of sleep. I was unprepared for what a luxury those became. In my attempt to be a pillar of strength, I made it harder on both of us.
She slipped and fell while we tried to get her into the bathtub. I did my best to catch her, but she still hit her head on the counter, requiring stitches. That was a trip to the ER. Other times when she asked to go to the hospital was because she felt dizzy, other times nauseous. Mostly she was just dehydrated, but I couldn’t say no. There were painful discussions with ER staff trying to get me to understand she could catch pneumonia and die in there. How do you explain that to a woman who is dying anyway?
One of her “friends” convinced her that the sleep meds would make her sleepwalk so she repeatedly threw them out. I had to lie to her about what they were so she would sleep a couple of hours. I stopped taking my own sleep medication for fear she might need something in the night. I also bought baby monitors so I could hear her. I barely slept.
At 2 a.m. one cold November night, I went to check on her, but she wasn’t anywhere in the house. I panicked. After searching the house, I went outside, and eventually found her wandering in a vacant lot. She was barefoot and wearing only her pyjamas. She fought with me just for putting socks on her. She yelled at me to get out. I stayed. Where was that newfound closeness we were supposed to be experiencing?
As hard as it was for me, I know it was much worse for her.
At Christmastime, she drooled in the cookie dough while attempting to make gifts for her friends. My brother threw them out instead of delivering them, and Mom never knew. Toward the end, she became like a very young, precocious child in her mind and mannerisms. My brother called it “chemo brain.” Maybe that was a blessing because she took joy in little things everywhere. We went on a hayride close to Christmas, and she sang to the snowmen. It was adorable. It broke my heart.
On Christmas Eve I called hospice, and a hospital bed was set up in the living room. I found out, after coming down with strep, that the stress of caring for someone can affect your immune system. This was years before COVID, but I wore the N95 so I could take her soup and change her sheets. We were snowed in by that point, and the hospice workers couldn’t get in. It was lonely, even though we were together. She stopped speaking or moving. I sat beside her watching her chest to make sure it continued to rise and fall.
The week before she passed, I slept in a recliner next to her bed. I put on all the movies I remember her taking me to see and her favourite music. At one point, I looked over to where she lay, unable to move, and saw a tear streaming down the side of her cheek. I whispered, “It’s OK, Mom. Don’t cry.” I knew I was a fucking liar. It wasn’t OK. She had every right to cry.
My brother was there when she passed one January morning. People talk about a death rattle. I want you to know it’s a real thing. It came loud and gasping, jerking her torso. Then she fell silent and was gone. The hospice nurse previously told us she’d hear us for about five minutes after she died, so we talked to her about how much we loved her.
Today, people tell me how great I am for taking care of my mom. It wasn’t great. Every time I talk with my aunt on the phone, she tells me I was a blessing. I know what she means, but I still believe it was a curse to watch Mom decline while being unable to do anything to heal her. I couldn’t make anything better for anyone. I just got to decide which of the three people she promised her antique divan to would ultimately get to take it home.
As terrible as going through this was, I’d do it again. It’s horrible to imagine anyone having to endure what Mom did alone. Still, I made plenty of mistakes. I hope Mom has forgiven me.
The experience changed me on many levels. That first summer after she was gone, I watered the garden with tears right along with the garden hose. Even now, I forget and pick up the phone to call her. On the first anniversary of her death, I got a tattoo in her memory. It’s a sunflower with birds flying from the petals up to Heaven. Along the stem are the words, “You are my sunshine,” a song she sang a lot those last months.
Sometimes the sadness pushes down on my shoulders, and I seek solace under my bed covers. I doubt it’ll ever go away. Maybe I don’t want it to.
There are good things, too. I brought Mom’s 10-year-old terrier home with me, Tiffie’s ― she’s now 17. Although she’s a constant reminder of my loss, the little furball stole my heart. She takes me for walks, and we hang out on the back deck at sunset together.
I don’t want applause or need a trophy. I did what families should do for each other. And while I wouldn’t wish this experience on anyone, it is one shared by many, and it’s an important part of life. I went into it unaware of what caregiving entails, of how much of myself I’d have to give away. But maybe it’s just that ― giving someone a part of you ― that is a kind of blessing, after all.